Wednesday, May 2, 2012

Pleased to Meet Me (Redux)

(I've been fighting a bug this past week, and also dealing with some "personal issues" - don't those always sound maddeningly intriguing - so I'm going to put up the first ever "The Best of Wheelchair Kamikaze" post this week. The post was chosen by very exclusive selection committee, namely me. It first appeared on the blog on August 13, 2009, so it's an oldie but a goodie. If you haven't previously read it, I hope you enjoy it. If you have already read it, please make believe you haven't, because as delusions go, self-delusions are one of my favorites. We'll be back next week with our regularly scheduled programming. Thanks for your indulgence.)

MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Right arm and right leg on the fritz, and I quite often have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.

I'm quite lucky in that MS has not dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. So far, at least, my faculties seem to be relatively intact. My short-term memory isn't what it used to be, but that may be more a function of age than disease. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.

I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.

When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society. Surely, there was still the chance that I might find myself sitting next to Jay Leno, chatting about my recent Oscar triumph. Nevermind that I hadn't acted in anything since my sixth grade production of "The Sound of Music", and I was much more likely to be directing traffic than a film anytime soon. In America, anything is possible.

Well, MS pretty much doused those flames. These days, my fantasies have less to do with winning Oscars than with taking a stroll around the block, though the chances of either are probably equally astronomic. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.

MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a "glamour" industry? Gone with the wind... Sexy little sports car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.

Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of new found innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.

I've always felt like something of a living anachronism, a man born in the wrong time. Well, if I want to spend my days in 1935, now there's nothing to stop me. So here I sit, listening to The Mills Brothers or The Ink Spots, and I never leave the house without wearing a fedora, preferably at a rakish angle. After all, what sets off a wheelchair in the summer better than a nice Panama hat? I can watch baseball to my hearts content, unencumbered by worries about that big project that is due, or tomorrow's budget meetings. I can spend my days making videos, taking photos, and writing, a situation that I literally used to dream of. Naturally, those dreams never included a wheelchair mounted camera, or writing about my experiences dealing with a dread disease, but, as my father used to tell me, if you want to dance you've got to pay the band.

Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be.

I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. With the love and support of my very caring (and very indulgent) wife, I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.

Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me, by the balls (sorry, ladies). But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

I do think MS has changed my perspective on many things, but I'm not sure the net negative has been as great as I at first thought. It has dramatically altered my perspective on time and energy. I've often said one of the gifts of my MS is the banishment of the idea that "someday I will..." I was relating this to a friend of mine, explaining MS may make a quarter of the things I wanted to do in my life impossible. However, it has made me push for the other 75%. If I succeed in just two thirds of them (though maybe not all as originally conceived), I've done half of my "some day list." How many can say this with a straight face whether they have MS or not?

Although I've followed your blog for quite some time, I don't remember this one (of course, that could just be my 'MS mind eraser' working.) All of what you say here has such meaning for me. I still struggle with these emotions, and having a "good" day here and there somehow seems worth the wait. Hope you feel better soon.Peace,Muff

Your posts are really interesting and thoughtful. I sometimes also think about similar things like "why I have MS", "How I will end" etc. Not just for the purpose of self control and dealing with MS itself but also to help my family describe my experiences with this illness, my possible prognoses and help to cope with them. Because I am a physicist maybe with some unwanted help of MS I have realized the effect uncertainty principle on our lives and how central and essential role it plays in our universe. So the answers to my questions are simple:

why do I have MS and those people who live very unhealthy livestyles do not? - Why not! This is past and done, although doctors imho don't know what MS is as they cannot define it.

Will I end as a bedridden person waiting in pain for merciful death? Probably. But not certainly, this is future and there is a fundamental chance I will not. There is also a chance that I will be ok again. The chance is astronomically small, but it is there.

Of course one cannot rely on those small chances, thats not the point. The point is the freedom which is comes with it and the uncertainty principle. Its very releasing.

Finally, sorry for my english as I don't come from an english speaking country.

Marc, so sorry to hear about the bug and the personal issues. I wish your body a quick recovery and I hope that your personal issues are resolved as quickly as possible. Your "re-runs" are, as others have said, well worth a second reading.

Marc, I second, third, forth, and fifth what others have already written. Your words are timeless and well worth another read. Hang in there my friend, there's a lot of people out here that really care about you.

Regarding loss of cognitive abilities mentioned in your August 13, 2009 blog: You appear to have little to worry about. At least I can’t remember any signs to the contrary. Regarding that bug you are fighting: My sweet, nine-month-old petri dish granddaughters from the NYC burbs just left me with a wicked strain of something vile. Have no mercy. Beat that bug with a hammer.

Hi Marc ,(my celeb MS friend on the net),I wish you quick recovery from all bugs and personal issues resolved asp. Your old blogs are always worth another read.I just read on the CCSVI blog that some MS patient has had a Jugular transplant with a doctor Herdaneze,with great results.Of course,with the MS mind eraser Im not sure which blog I was looking at.I wish you all the very best MarcPat FeinermanRehovotIrsael

Sign up to Receive New Posts by E-Mail

E-Mail Me

Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...